MRI Number Four

Yesterday was Owen's MRI appointment in Boston.  The plan was the same as his past MRI's.  He would head to the PICU for Propofol sedation administered by Karen and Alice, once sedated they would perform the MRI, and then there were a couple of pokes and punches to be done for testing.  Unfortunately, we were unable to complete the MRI yesterday.

Owen has started to have trouble maintaining his airway.  If you listen to him breathe, it sounds like his chest is very congested and he needs to just clear his throat.  The noise is actually caused by lack of muscle tone in his soft palate.  For now, he is able to maintain good oxygen levels, but what this means for his future is a little murky.  Once Owen was sedated, the trouble he has with his airway became exacerbated and he needed support to breathe.  If this were a different procedure, like a CT Scan, where Karen could be next to him and help him, it would not have been a problem.  Unfortunately, Karen has to manage Owen from afar when he is in the MRI machine.  It just wouldn't work.

Our option now for an MRI is for him to undergo general anesthesia.  There will be some discussion with Owen's team and the anesthesiologist about this, but we are probably going to wait.  Owen did give us some blood and urine while sedated and we also did another skin biopsy.  Pete and I gave blood yesterday and the WES genetic testing has been sent out.  At this point, I think we will probably wait for those results and then make a decision about another MRI under general anesthesia.

We are disappointed.  We are concerned about what the airway issue means in the large picture.  It is a setback, but we still have our sweet, beautiful boy home with us.